I thought I would have to teach my daughter about the world; turns out I have to teach the world about her. They see a girl who doesn't speak,
I see a miracle who doesn't need words.

Monday, November 7, 2016

A Long Overdue Update

I was really hoping the rest of our summer would be uneventful and I could post about some fun things we've done.  Hoping.  We went on vacation to Hatteras in August and day 1, Aaron would up getting really sick.  Like couldn't get out of bed sick.  The week after we got home, I wound up getting really sick.  Like couldn't get out of bed sick.  A week later Zach got really sick - diagnosis pneumonia.  A week after that - yep, Alex got sick.  

I started to write this post over two months ago.  I just haven't had a chance to blog with everything that's been going with Alex.  Honestly,even if I have had a minute and I've attempted to blog, I just haven't had it in me to rehash everything and wound up shutting the computer down.

So, to finally write it out, the very abridged version of the last few months is this:

Alex had over 60 seizures within a 12 hour period that landed her in the hospital for a week.  It was the first time I had to administer emergency meds at home and the first time Zach had to experience it as well, it wasn't pleasant. 

She was put on several anti-convulsants and sedatives to allow her brain to rest. 

On top of all of that, she wound up with pneumonia.

The 7th floor of the pediatric unit has an outside playground.  On day 4 her IV occluded (notice her swollen left hand) so she was disconnected for a few minutes and we tried to take advantage of the temporary "freedom" and took her outside for some sunshine and fresh air - but she wasn't feeling it.

Even a visit from her brother couldn't elicit a smile.

Despite all of the IV meds and interventions Alex was still seizing so at the end of the week she was transferred up to the Epilepsy Monitoring Unit.

Meds were changed around and her Onfi dosage was increased and the seizures seemed to settle.  On Day 6 we even got a half a smile!

We were finally discharged  and started weaning her off some of the heavy duty things she was getting in the hospital but things got progressively worse when we got home and we landed back in the ER a week later.  At this point Alex had completely stopped eating - it was like she forgot how to suck/swallow all over again and she was being fed strictly through her g-tube.  The day we went back to the ER she was writhing in pain, crying and moaning for hours.  She had no urine output for almost 16 hours despite being tube fed and receiving lots of fluids and it was obvious something was wrong.   Again, to make a really long story short, after LOTS of tests and blood work I had been doing a lot of research and asked if she could possibly be having withdrawal effects from one of  her seizure drugs, Onfi.  Ding, ding, ding...that SEEMS to be what the culprit was.  Alex had been like a zombie for weeks, totally out of it but not sleeping.  Even in the hospital they had given her IV doses of Versed and Valium and she still couldn't sleep because she was so uncomfortable.   It was so hard to see her so out of it and just blank.  

We've seen our fair share of specialists in the meantime and we're still searching for some answers.  A pulmonololgist happened to look at Alex's EEG's while she was in the EMU and he feels like some of Alex's convulsions were caused by her not breathing during periods she was trying to sleep which led to her hyperventilating and mirroring seizure activity.   Two weeks ago we went back into the hospital for a sleep study...I will say God was with us because Alex does NOT sleep when she's in the hospital and despite being there, and being hooked up to all of this "comfortable wiring", (especially the one in her nose - I was so uncomfortable for her just looking at it) she slept for almost the entire night.  

The results of this test should be in sometime this week and hopefully, just hopefully, we'll have some answers.

We've been weaning Alex off the Onfi for the last month and she finally had her last dose this past Friday night - while her seizures are increasing (we expected that and are getting ready to introduce a new medicine), we are seeing Alex and her personality reemerge and that's all I choose to focus on and be thankful for at the moment.

Monday, August 1, 2016

Wow, Where Has The Time Gone?

I cannot believe it's been months since I've had the chance to blog.  I have heard from quite a few people who follow Alex's blog asking how she is and I can't begin to tell you how much I appreciate all of the love and prayers for her...and us.

I have SO much to catch up since my last post.  Life has been crazy since Alex got out of the hospital and we've had to adjust to a new norm and there's lots to catch up on, but I think I'll start with the latest and try and work my way backwards!

Last week we took a quick (if you consider a 7 hour trip quick!) road trip to Shriner's Hospital in Philadelphia for a second opinion on Alex's spine.  We were scheduled for a full spinal fusion at the end of August and my gut was just telling me to get a second opinion.  We were told that the doctor's at that hospital were the best of the best when it came to the spine so we arranged to meet with their spine doctors, their cerebral palsy team and their pain management and rehab team.

For weeks I had been trying to get a hotel room for us with no luck.  I finally put an application in for the local Ronald McDonald House.  When they called to say they received my application I mentioned that I had tried to make multiple hotel reservations but couldn't find a hotel and she responded - "...and you're not going to find one...it's the National Democratic Convention, everything that can be booked has been."...AHHH, story of my life - OF COURSE our appointment would be scheduled in Philadelphia at the same exact time of the convention!  If you ever have to book a room at a Ronald McDonald House, they don't know what their schedule is ahead of time, they don't know if families will actually check out when they are scheduled to, they don't know if emergencies will come in, so they cannot tell you if you have a room until the day of your arrival - and that time can be between 10AM and 1PM.  Under normal conditions that would be fine because I could have had a hotel as a back up but under these conditions it was just another major stress factor. Thankfully as we were packing the car up we got a call that they did in fact have a room for us at the Ronald McDonald House - Whew!

I have to add that I have the best friends in my life, I honestly do.  The night before my friend Sarah had given us this "go-go" bag for the car that had snacks, wipes, tissues, mints, and gum:

...and the morning of our friends Bob and Kate delivered this cute backpack to her with snacks, books and magazines. My friends also know me SO well that each bag contained a little travel wine bottle :) 

Tuesday morning we had to be at the hospital at 8:45AM - I explained to Alex what was going on, who we were meeting with and why - explained there would be "no ouchies" only talking - but she wasn't having it and was pretty grumpy when we got to the hospital - Aaron had to keep walking her just to keep her content - if he stopped, she threw a little fit.

When we got into the room she was all smiles so I thought we were good!

...WRONG!  As soon as the doctors came in she had an absolute melt down - she screamed and cried so loud I could barely make out what the doctor was saying.  He was so understanding and compassionate and said he understood how scary it could be and continued to talk over her screaming until Aaron had to finally take her out of the room to calm her down.  PTSD at it's finest :(

In short, it was a great appointment - the staff at the hospital could not have been more friendly and accommodating, the pain management team thought she looked great, the CP team gave us their thoughts on her orthotics and braces and then we have an appointment in 6 months to go back to Philadelphia to meet with the spine team again.  

Once we got in the car to head home Alex was back to her happy, smiling self.   Eye of The Tiger was playing on the radio when we got in the car - Alex loves music and she was happily tapping her feet to the song - which I thought was a pretty appropriate song for the day!

Once we got home the trip had taken it's toll on her and she passed right out and slept the entire night.

So, the best news of all is that the spinal fusion for August has been CANCELLED!!!!  When Alex had her x-rays done in April, her curves were at 44 and 45 degrees.  The x-rays in Philly measured her curves at 32 and 34 degrees!!!  THAT IS HUGE!!!  The doctor said that he was pretty sure once she was out of the brace for a bit she could be closer to 40 degrees, but even in her in-brace x-rays in April she was still in the 40 degree range so I am SUPER ENCOURAGED by the progress we are making!  It still pains me to look at the x-rays and see how curvy she is and how off her hips are, but we're making progress and the curve is not progressing at this point!!!

The doctor did say that he was pretty sure Alex was going to have to have the surgery at some point down the road but it was not as imminent as the surgeon's were telling us it had to be.  I needed to hear that.  I needed to hear that I wasn't comfortable with her having the surgery because I was making an emotional decision.  The Philly doctor said the same thing I have been saying all along and that is she is still too thin, she's had a tough year and needs time to recoup her strength and energy.  I needed to know that her lungs weren't in danger and that my emotions were not making the decisions for me.  So our marching orders were to keep doing what we're doing and we'll regroup in February.  So we'll keep wearing the brace every day:

And she'll sleep every night in her DMO (another form of a brace), which she clearly doesn't mind:

I know so many people have been thinking about Alex and praying for her.  Please continue to keep the prayers for her spine coming!  I feel like a HUGE burden has been lifted off my shoulders now that we don't have the surgery looming over us and we're looking forward to enjoying the rest of the summer!

Monday, May 9, 2016

Hospital Update

Two weeks ago Alex wound up in the hospital.  She was so lethargic, her coloring wasn't good, she wasn't urinating enough, she had lost more weight, she was having a lot of seizures and we were pretty sure her cecostomy tube wasn't working.  I have to say this is the first time I've ever been that scared and worried about her.

This is how she was by the time we got to the Emergency Room.


Seeing her so listless was really hard. 

After a lot of testing, chest and stomach x-rays, a dye x-ray of her cecostomy tube and ultrasound of her kidney and liver we still have no real definitive answer for what was going on.

We do know is that her tube was a little backed up.  The doctors were more concerned with her seizures and weight loss so focus was placed on nutrition and seizure management while we waited on some of the labs to come back.  One of the initial concerns was Alex was malabsorbing and that would explain the weight loss and increase in seizures - if her body wasn't absorbing nutrients, it would also mean her body wasn't processing her seizure meds.  That was eventually ruled out   On the 3rd day we were there Alex started looking like she was having additional grand mal seizures that were lasting a lot longer but I knew they weren't seizures because while she was convulsing I could get her to look at me, and she would intermittently stop for a second or two.  I recorded one of the episodes on my phone and it lasted for over 9 minutes.  When the neurologist rounded and she watched the video she surmised that Alex was in pain and that was her reaction to the pain.  She explained in kids like Alex with her tone issues and  also chronic constipation that the stomach lining can become very inflamed and cause referred pain and so she started her on a nerve pain medication called Gabapenten.  Gabapenten is also a seizure medication (albeit not a very good one so it's not generally used primarily for seizures) so they thought adding that may help control her seizures a bit better as well.  (Which it hasn't!)

Day 4 - we're back to smiling some and look more like ourselves!

...and later that evening I was getting some much needed love from my girl!

One of the main goals for discharge was for Alex to gain weight - she was still loosing while we were there so on day 5 when she gained 4 ounces I started packing up, we were ready to go!  Alex does not do well when she's in the hospital (who does?) but she does not sleep.  At all.  By day 4 the doctors were saying she was in an "altered mental status", which she was, but because she was completely sleep deprived - I was about to be in an altered mental status myself after 5 days of no sleep.  It was a vicious cycle too because they also wanted her seizures better controlled before we left but the more sleep deprived she got, the more seizures she had.  When the doctors rounded and said they wanted her weight trending for a few more days the look on my face must have spoken volumes because the doctor looked at me and said, are you ok?!?  I really liked this doctor, he rounded the whole time we were there and, minus one disagreement we had, I felt like we clicked - which is not easy to do with a lot of doctors.  On the second or third day after several conversations he asked me if I was a nurse to which I replied, no, but I do play a doctor at home and he thought that was pretty funny and said I should go on rounds with him and his team.  :)   When I told him I really just wanted to take Alex home he said that he could argue that she wasn't stable but after a bit of discussion he agreed that I knew what I was doing and I promised that if she wasn't getting any better at home I would bring her back in.  We came up with plans to implement at home and were scheduled for several out patient follow-up appointments for the following week.

It was a tough week - my mom was sick with the flu, the NASCAR races were in town so Aaron had to work and poor Zach was being juggled all around.  It's not in my nature to ever ask for help so I have to say  I am so thankful for my wonderful friends who just stepped right in to help me.  It's so easy to get so caught up in how tough things are but there was SO much goodness surrounding us we couldn't help but feel all the love and I feel like I have to give some shout outs in...no particular order!

To this crew - I definitely could not have gotten through the week without them:

My friend Kate who made a survival basket for us with everything we could need in the hospital and who came up to the hospital to help me bathe Alex and gave me time to leave the room so I could go downstairs to eat - she was also at the house when we got home because Aaron couldn't be there and helped me get her settled.  Scott and Leslie - Rudy's "furry godparents" who had taken him for the weekend and relieved another stress not having to worry about him as well.  Mr. Bob who cooks some pretty fierce meals and always comes to visit her when she's sick because he knows he can make her smile.  My friend Sara who had taken Zach several nights during the week, feeding him, helping with homework and coming to my rescue early Sunday morning and then spoiling him with breakfast and a shopping trip to Target. And my sweet little Jane Anne who adores Alex and prayed that God would make her feel better because she loved her - and even though Alex can't speak she knows she loves her too.

So thankful for my sister and brother-in-law coming to the hospital too and sitting with Alex so I could leave the room for a few minutes.  For her nurse Tammy and her husband Dale who came to visit and for her prayer bear.  I don't leave the hospital when Alex goes in so to have someone come sit with her to give me a break is such a blessing.  My friend Lynda for coming to see me and for the great conversations I get to have with her.  Lynda also shared a picture of Alex on Facebook that resulted in over 14,000 views - that meant 14,000 prayers and good wishes for Alex. 14,000 - that's mind blowing to me.  

For my friend Cheryl for always having Zach over and for being willing to take him that weekend even when her daughter had pneumonia.  And the awesome lasagna they made last time Alex was in the hospital (I'm still waiting for the recipe for that - hint, hint!)  

For my other friend Cheryl for the beautiful flowers she sent to cheer Alex (and me!) up.

For my friend Shelby who made this incredible "sunshine" basket to help cheer everyone up - there was literally something in there for all of us - it was the most creative basket I've ever seen!

For my friend Cat who made us this amazing dinner when we got home.  With Aaron having to work the day we got him this was huge....and DELICIOUS!

We are home, we are on the mend and we're getting back into a much needed routine.  To everyone that called us, sent us messages, prayed for us - we really are so thankful for each and everyone of you.  Thank you for loving us - and our sweet girl.

Wednesday, April 13, 2016

Miracles Are All Around Us

Two weeks ago I went to see Miracles From Heaven.  I thought I needed to hear the message considering the state I was in.  Considering the state I was in, probably not the best movie choice for me!  I cried throughout the entire movie.  It hit way to close to home - I could relate way too easily. Truthfully, it hurt. At the end of the movie they show the "real" family and the mom makes a statement about miracles being all around you and how they can be in complete strangers, in every act of kindness.  Miracles are Gods way of letting us know we're not alone.  

Fast forward two weeks and Alex is supposed to run with our Inclusive Racing Friends in the big Monument Avenue 10K.  We've been running with Inclusive for the last two years and I really never have the right words to articulate what the group, and the amazing friends that we have made means to us.  I can't explain the excitement of race day, I can't put into words the gratitude I feel for the people who sacrifice their own run for Alex to enjoy something she would never be able to do without them.  I can't explain the immense joy I feel seeing Alex so happy getting her medal and with the wind in her face (and we've run in some pretty extreme weather!)  Earlier in the week we were watching the weather and when they called for the temps to be in the 30's with snow showers Aaron looked at me and said, you know she just can't run in that this time.  As much as I wanted to argue with him and tell him she would be fine, deep down inside I knew he was right.  And again, I felt deflated and mad that because of everything she has going on she can't even enjoy a run.  We hadn't met the runners of "Team Alex" for this race but from some e-mail exchanges and Facebook posts I saw I knew they were going to be a great group to run with and I knew Alex was going to have a great run and with the sacrifices they were making I felt so guilty that they were not going to get the true feel of what racing with Inclusive felt like. And I was beyond disappointed.  

On race day my phone went off and I opened up a text message from one of my favorite Inclusive friends Laura with this picture:

I didn't think I had any more tears left in me.  Turns out I did. A lot of them!  Bryan, on the end on the left, is the founder of Inclusive Racing and he decided that Alex WOULD be at the race!  I felt SO much love for Alex, I felt so grateful.   I had e-mailed the team earlier that morning apologizing to the team and I got a message back from Kimberly (standing next to Bryan) that said: 

"It seems Alex has hundreds of fans and friends in Richmond.  Many people called out her name to us as we ran today.  A couple people came over and said they know Alex and love her!"  

On Monday we went to therapy and Sarah, who is a physical therapist at therapy but is also on the Inclusive Racing Board, stopped Alex when we walked in and said she had something for her.  Then she put a medal from the race around her neck.

This picture DOES NOT do the excitement Alex showed any justice at all.  She laughed and hugged her arms to herself and was she was SO happy. (And, I had more tears.)

Miracles are all around us.  Miracles can  be in complete strangers, in every act of kindness.  Miracles are Gods way of letting us know we're not alone.  

It's so easy to get caught up in all the bad things and sometimes it's so hard to see the forest thru the trees, but we are completely surrounded by miracles.  We are SO thankful and grateful to Bryan and EVERYONE that makes Inclusive what it is.

April 30th is the 5th Annual We Heart Harlie and Friends fundraiser and we are so blessed to be a part of that as well.  My friend Lynda works tirelessly to make this event bigger and bigger every year.  Thanks to this amazing organization we were able to make a handicapped accessible bathroom for Alex.  For more information about the organization, to learn about the pretty cool kids she's helping, or to sign up for the upcoming event visit http://weheartharlieandfriends.org/

We are also so thankful to my friend Kate and all of our friends at Jacob's Chance who give Alex all of the opportunities to play the sports that she loves so much and also give her so many social opportunities.  For more information on this amazing organization and the great things that are happening, visit www.jacobschance.org.

 Miracles are all around us.  Miracles can  be in complete strangers, in every act of kindness.  Miracles are Gods way of letting us know we're not alone.  

We're surrounded by miracles and kindness.  We're not alone.  Thank you.

Sunday, April 3, 2016

Not Such A Great Week

Oh this sweet girl of mine.  Last week was a rough one with her. For starters, we had a lot of appointments.  We had 2 orthotic appointments for the brace that she still hasn't been able to wear since November, we had appointments with her GI, Nutritionist, X-rays of her abdomen, physical therapy,  orthopedics for her spine x-ray and topped it off Friday night with a trip to the ER. This week was Spring Break and we were supposed to leave Saturday morning for a trip to New York to visit family.  Zach and Aaron have made a trip or two for a visit but Alex and I haven't been in years.  We haven't seen our godson since his Christening and he will be four this month. Our niece was born in November and we were all so looking forward to meet her.  Ultimately it came down to the wire and there was just no way Alex was going to be able to make such a long road trip with all of the issues she has going on right now.  I hated seeing the look of such disappointment on Zach's face when I told him we weren't going.  Instantly I felt a Hayes pity party of 1 coming right up.

This kid right here deserves the brother of the year award.  For so many reasons.  But he really earned it this week in-particular.  Sometimes being the sibling of special needs sibling can be really cool, and other times it can really suck.  

Zach was really looking forward to being with his cousins.  We thought maybe we could cheer him up and do a few days at the beach but that didn't work out, and then we were going to get a cabin because Zach loves to be in the woods and as luck would have it, it rained.  And all week he saw pictures of all of his friends doing really fun stuff and I could tell it bothered him - and I get it, everyone has said stuff happens, he gets it, he'll be fine; and I know he'll be fine but at the end of the day I'm not discounting his disappointment and the fact that stuff happens, but he has to sacrifice a lot, a lot of the time, so this just added fuel to my pity party. 

I am so thankful for my wonderful in-laws and the sacrifices they have to make to be with our family.  Because we had to cancel our trip last minute Aaron's dad, step-mom and Aunt Helen left New York on Easter Sunday at 6:30AM and arrived at a hotel here at 11:15PM.  They spent one day with us before having to head back home. 
 We're loved and I'm so thankful we have the most loving and supporting family all around us.  

And while I'm at it, this guy right here also deserves the husband of the year award. I'm definitely no fun to be around when I'm having my pity party.  I'm angry at the fact that everything has to be so hard sometimes.  I'm angry that we can't be a "normal family" this week and be out doing "normal family spring break stuff", I'm angry that Zach is disappointed and I'm angry that Alex is hurting and I can't do a thing about it.  I'm angry that I can't remember the last day that she was seizure free.  I'm angry that we have to spend over an hour each night dealing with this new tube and our "new nightly routine", I'm angry that despite everything we've done to make this situation better for her that the tube still isn't working properly.  And despite all of that Aaron just understands that I'm in that mood and he let's me have my pity party without calling me out on it, and as always, he steps right up to plate and is as hands on as ever.  

I had posted this picture of Alex on Facebook while we were at one of her orthotic appointments last week - the intent of the picture was really to poke fun at her hair and saying how it was really indicative of the type of morning we had, but once I posted the picture it struck me just how much weight Alex has lost and how skinny she looks.  This has been a hard year medically for her.  She's been intubated 5 times this year, has had to be on strictly tube feedings for one reason or another and has been NPO more times than I can count.  Additionally she's grown a lot and hormones kicked in so I really shouldn't be surprised that she's lost some weight.  She's gone from 80 pounds to 66 pounds. For an average 14 year old, she should be double that.  The nutritionist told us this week that all of her blenderized meals should be at least 280 calories.  I think that number is actually really low and when I started calculating the calories of all of her meals they are almost double that so I'm hoping we can put a few pounds on in the next few months.

You would never guess from the big smile on her face that this picture was actually taken while we were in the Emergency Room Friday night.  Again, I posted this picture on Facebook because her shirt says Life Is An Adventure - Live It. I'd say life with her is most definitely an adventure!  There was some question about whether or not her new cecostomy tube had become dislodged so we had to go the ER for a dye injected x-ray to see if the tube was still in its tract.  Thankfully, after 4.5 hours of sitting in the ER we were told it was still in tact.  However, the tube is still not working the way it should be, so I'm really beyond frustrated about that.   We have gone around and around with her GI team about the best way to get the tube working effectively and I'm feeling a little like a hamster on a wheel at the moment.  

The icing on the cake last week was our appointment with her spine doctor.  Unfortunately, her scoliosis has progressed and is starting to work toward her lung.  His exact words to me were that he didn't want to kick me while I was down, but Alex is going to need a spinal fusion.  However, he said because Alex is so frail right now she wouldn't be able to have the surgery at this point and said we had to work on her nutrition and strength before the surgery he has scheduled for August.  I told him we hadn't been able to brace Alex because of all of her GI issues and ultimate surgery last month and could we just go back to the brace to try and correct some of the curve?  He told me that Alex's scoliosis is not idiopathic and because it was in fact neuromuscular that she wasn't going to get better, only worse.  As a side note when he first called me out to look at her x-ray the first thing I said is "Why does she have so much poop in her transverse colon?!?"  He just looked at me with a funny look and I said, "Sorry, I've gotten pretty good at reading poop on x-rays!" - to which he replied "I can see that!" - anyway - once I got past that, it took all I had to hold back the tears when I looked at how crooked she's getting and how off her hips are.  So, despite what he's said, I made an appointment and we went to be fitted for a new brace that will accommodate her cecostomy tube.  I totally intend to do everything and anything in my power to avoid this surgery at all costs.  We will begin bracing her for 23 hours a day and we are praying that the brace will start to correct.  Again, I posted this picture on Facebook and I'll ask the same thing I did there - If you're reading this her dad and I simply ask that you say a prayer for her that she gains strength and that her back miraculously gets better and we can at the very least postpone surgery long enough before it further impacts her lungs.  The bible says (Matthew 21:22) "And whatever you ask in prayer, you will receive, if you have faith.  We have been saying a lot of prayers for her and we have faith.  We just ask that over the next few months if Alex happens to come to mind that you prayer for her - specifically her back.  

My mantra has always been "Live, Laugh, Love" - lately I'm having a hard time laughing so when I came across this phrase it resonated with me and I decided I'm going to give this one a whirl for while:

Thursday, March 17, 2016

Life With A New Tube

On February 26th Alex had her surgery to have her cecostomy tube placed. 

In a nutshell a tube called a chait tube was surgically placed into Alex's cecum, which is located at the beginning of the large intestine. 

Every day we run a saline solution through the chait tube which bypasses the small intestine and basically forces any stool through her large intestine so it can't "back up" and cause all of the constipation issues she was having.

The chait tube looks like this:

The long spiral stretches out into her large intestine when the saline is administered.  

We typically call Alex "Allie Bean The Beauty Queen" - a nickname my sister lovingly gave her that stuck - so the morning of her procedure she wore her tiara like any queen would.

We've been through a LOT in Alex's 14 years so I'm not sure why this surgery hit me so hard and had such an effect on me emotionally, but it did.  I couldn't talk about it without crying - I couldn't talk about her without crying.  If I think about it now in retrospect I think it's because I'm still a little bitter that she had to have the surgery in the first place because I think it's just so unfair with everything else she has to deal with, but secondly, she was hurting.  In the past surgeries were done out of necessity but not necessarily because she was in pain so this was different.  And the sad truth is I really thought as Alex got older the easier things would get, but with everything we have been through in the last year I'm realizing it's the complete opposite.  

The surgery itself was less than an hour and a half - and we were able to be with her in PACU before she woke up so she wasn't scared - I loved that we could be there to comfort her the minute she woke up.

By 4:00 that afternoon things started to get rough and Alex just cried.  She couldn't get comfortable and despite all the pain meds she had on board she was miserable.  She moaned the ENTIRE night, never closing her eyes to sleep.  By the time she had been awake for over 24 hours she was a complete zombie.

The surgeon came in to see her and wanted her to spend another night because her stomach was more distended than he had hoped it would be and she was still crying and moaning so he wanted to see her more comfortable.  By 8PM that night she had been awake for over 30 hours, me over 40 and I knew there was no way we could make it through another night at the hospital so we opted to take her home.  I told the nurse this wasn't my first rodeo with her and that I promised I would bring her back if she showed any signs of infection (she had been on an IV antibiotic for 24 hours) or if she wasn't comfortable once we got her home in her own bed.  We got her home and settled in her own bed - and she slept 12 nice and long solid hours.  Momma knows best.  (Well, actually Daddy knows best, he started the push to take her home).

Anytime someone has intestinal surgery they get them up and walking almost immediately to alleviate the air that has accumulated.  Not so easy with Alex.  When she got up the following morning her stomach was still distended so we got her into her walker to see if moving around would help alleviate that - and it did.  

Day 3 post-op, up walking, and back to her happy self.  She amazes me.  She inspires me.  Truly.

So, this is what our belly looks like now.  2 tubes.  I still despise the tube and it's constant reminder, but it has made a huge difference for her and she is SO much more comfortable so for that I am thankful.  

And probably the MOST exciting news and silver lining to my cloud is that for the first time in FOURTEEN years my big girl has been able to use the potty!!!!!!!  And the best part about it is she loves going into her bathroom - she gets so excited - and we make a REALLY big deal about everything that happens in there!  We are going to try and time train her over the summer and see if we can make it a permanent thing - but once we run the saline through her tube we can pretty much time the time it will take for her to do her thing so.....
I couldn't resist - look at that face!
 So now it's onward and upward.  We'll take this, like everything else we've dealt with and make the best of it.  Bathroom parties every day - there could be worse things, right?!?